(This article appeared previously on Caring.com.)
Don’t believe these eight myths about Alzheimer’s:
Myth 1: “Mom can’t have Alzheimer’s — she remembers all kinds of things.”
Alzheimer’s disease affects newly learned information or recent memories first. Memories of the more distant past — including arcane details such as names and places — may endure for some time. The majority of longer-held memories don’t typically erode noticeably until the middle stage of the disease. That’s why someone recently diagnosed can often recall things in the past quite well.
In addition, an Alzheimer’s patient has good days and bad days, sometimes appearing to improve or to function in a “back to normal” way for short periods. Sufferers also tend to retain basic social skills during the early stages of the disease — including the ability to “rise to the occasion” by doing their best to cover up potentially embarrassing or disruptive signs of the disease, like disorientation or memory loss.
Myth 2: “If you live long enough, you’ll get Alzheimer’s.”
The disease affects people differently. Some people become more reserved or timid as the disease progresses.
Alzheimer’s and other forms of dementia aren’t an inevitable part of aging. True, almost everyone forgets things occasionally from middle age on. But not everyone develops a brain disorder that affects cognition (thinking ability), including memory, judgment, and eventually personality and behavior — which is what Alzheimer’s is. Millions of people reach their 70s, 80s and even 90s with good memories and relatively little decline in mental abilities.
Myth 3: “Alzheimer’s only affects the elderly.”
It’s true that the vast majority of people with Alzheimer’s disease are older than 65, including half of all people older than 85. In fact, for each five-year span beyond 65, the percentage of people with the disease doubles, according to the National Institute on Aging. But a particular rare form of the disease, early-onset Alzheimer’s, can affect adults as young as their 30s. It strikes most commonly in the 50s. Early-onset Alzheimer’s disease accounts for only between 5 to 10 percent of the more than 5 million Americans with Alzheimer’s.
Myth 4: “Most people with Alzheimer’s are oblivious to their symptoms.”
Typically, those in the early stage of Alzheimer’s disease or other common forms of dementia do realize, at least part of the time, that something’s wrong. (Whether they recognize it as Alzheimer’s is another matter.) Most people with the disorder are aware that they’re experiencing memory lapses, for example, or that they’re starting to have trouble doing certain familiar tasks (following a favorite card game, cooking a particular recipe). Insight varies by individual, and the degree of awareness can shift from day to day.
Depending on their level of awareness and attitude toward correction, people with Alzheimer’s may appreciate being gently told when they make a mistake due to memory loss, disorientation, or another disease symptom. On the other hand, self-awareness of symptoms can make someone frustrated, angry, scared, or socially withdrawn. As the disease progresses and symptoms worsen, awareness of the situation is likely to decline.
Myth 5: “My parent has Alzheimer’s, so I’ll probably get it, too.”
Having a parent or sibling with Alzheimer’s does increase your risk for developing the disease compared to someone without a familial link. But it doesn’t mean you’re likely to get it. Family history only increases your risk slightly.
The role of genetics in the development of Alzheimer’s disease is still under investigation. Researchers have identified a “risk gene” called APOE-e4 (apoliprotein E-e4). APOE-e4 is one of three common forms of the APOE-e gene. Everybody inherits some form of that gene. Inheriting APOE-e4 from one or both parents is known to raise the risk of developing Alzheimer’s. But how this works is unknown, and it’s likely other genes are also involved.
Specific forms of Alzheimer’s disease are more likely to run in families: for example, familial Alzheimer’s disease, an early-onset type that accounts for fewer than 10 percent of people with Alzheimer’s. It’s caused by one of several rare gene mutations. More common forms of the disease, those with a “late onset,” however, don’t demonstrate a clear pattern of heredity.
Genetic tests are available that can identify the form of the APOE gene a person has, as well as the known rare gene mutations. A special lab must run these blood tests; a genetic counselor can assess the risks and benefits of testing for the possibility of a disease for which there is no cure. Most doctors don’t recommend routine testing. But you should decide what’s right for the person you’re caring for and her family.
Myth 6: “Dad’s Alzheimer’s will make him an angry and aggressive person, and he will lash out at us eventually.”
It’s a common worry that a patient with Alzheimer’s will eventually turn irate or violent. Aggression is less common than you might think, however. It’s not a guaranteed part of one’s experience with the disease. It’s likely that someone with Alzheimer’s or other forms of dementia will feel frustrated or angry at times — perhaps especially when in an unfamiliar environment or when he’s embarrassed — but he may not express those emotions as violent outbursts.
The disease affects people differently. In fact, some people become more reserved or timid as the disease progresses. There are many ways to manage the full gamut of behaviors prompted by the disease. For those in the later stages of Alzheimer’s, the right care may mean a memory care community, where staff are trained to handle common dementia-related behaviors, including anger, aggression and violence.
Myth 7: “Alzheimer’s symptoms are reversible.”
A great deal can be done to treat and manage Alzheimer’s symptoms, slowing the pace of decline and helping someone with the disease retain independence and quality of life for longer than if these things went unattended. This is especially true with an early diagnosis. Possibilities include medications, environmental cues, cognitive therapy, and treatment for related conditions, such as depression.
Ultimately, however, Alzheimer’s is a progressive disease. A person may function fairly well for years in its early stage, or may decline rapidly. But there’s currently no way to reverse its progress or cure it.
Myth 8: “There’s no bright side to an Alzheimer’s diagnosis.”
It would be sugar-coating to suggest that Alzheimer’s is not a particularly difficult disease for the sufferer, the caregiver, or the patient’s family. It progressively robs her of her brain and, in turn, her personality, and it places a considerable emotional, financial and practical burden on all those providing care. Many people do, however, come to appreciate some positives that can come from this hard situation.
Many adult children, for example, derive deep personal satisfaction and pride from meeting the challenge head-on and making their parents’ last years safe and comfortable. The crisis can be an opportunity to purposefully reconnect and share quiet quality time as a family. Some people realize that “now’s the time,” before a parent’s memory deteriorates further, to record a family history or sit down together and identify the faces in old photographs.
Another silver lining: Alzheimer’s diagnosis often brings together scattered or estranged family members as they work in concert to provide care.
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